Clara, 15, was diagnosed with cystic fibrosis when she was a few months old. Since then, her life has been full of hospital visits, medication and physiotherapy. The ambitious teen isn’t letting her condition get in her way though. Clara tells Sparks about life with cystic fibrosis.
“When I was a week old, my parents started noticing that I was losing weight. I threw up my food, I coughed all the time and I had very raw skin. After numerous hospital visits and seeing different doctors, we eventually went to a dermatologist. He asked my mum if, when she kissed me, my skin tasted salty. It did. That’s when the doctor suggested I was tested for cystic fibrosis. The tests came back positive and I was immediately put on medication.
Life with cystic fibrosis
My parents hadn’t heard of cystic fibrosis before. When the dermatologist originally suggested that could possibly be what I was suffering from, Mum did some research into the condition so I don’t think she was quite as shocked but after the diagnosis, I think my parents were incredibly upset. The doctors refer to it just as ‘CF’ but you won’t hear Mum calling it that. It’s so deeply affecting that she doesn’t want to reduce it to something so little.
I have a little sister, Verity, who doesn’t have it but she does carry the gene. Verity is amazing, we get on really well. She’s so calm about it all and I know sometimes the cystic fibrosis gets on top of her because I have to have a lot of treatment.
At the moment, my routine is particularly heavy. I probably spend about an hour of my day taking medication and another hour for physio. By the time breakfast has finished, I’ve already taken about 12 pills. I also have to take medication with everything I eat so that I ingest the fat otherwise my body doesn’t absorb it. I need to do 25 minutes of physiotherapy in the morning and evening and I have to go to the hospital every three months for a check up.
The clinical trial drug
Before I stared on a clinical trial drug called Orkambi, I had to go every month for tests and to check my liver function. It’s been two years since I was hospitalized for intravenous treatments. The treatment lasts for about two weeks. I had to have a bronchoscopy – where the doctor examines your airways – when I went in.
When you wake up, it feels like someone has knocked you out with a brick and punched you in the ribs. That is the worse feeling I’ve ever had. But I haven’t been hospitalized really since I started taking Orkambi. It’s really changed my life.
My lung function has gone way up. I barely cough and I do a lot of running which I want to carry on. Before taking the medication, I could barely keep up when we went running at school. I’d always be in the last five, it was just so rubbish. Now I’m coming second in these same runs! I’ve also hit a 5 minute mile which I’m so pleased with.
Sometimes I feel that it’s unfair that I have cystic fibrosis. I do a lot of singing and one of the antibiotics I take can make my voice sound quite croaky so that’s not nice for me. I had a concert and I couldn’t sing properly in that. I’ve been quite down especially because the medication takes a long time and is very draining. Sometimes it gets on top of me and I get sad. But there is just no point feeling like that. I have to get on with it like I always have. I don’t know what its like to not have cystic fibrosis and not take medication.
Cystic fibrosis has made me stronger
Cystic fibrosis has made me a lot stronger and more determined than I would’ve been otherwise. I think people with challenges like cystic fibrosis come out stronger than others because they’ve gone through things that other people can’t imagine. You’ll always be the stronger person, even when you feel vulnerable. It’s incredibly important to remember.
I want to go to Oxford University and study English or languages. I know it’s quite ambitious but I would like to do something important, like to be a journalist or a writer so that people listen to you and you can have an impact.
As a society, I think we need to protect the vulnerable. If we don’t do that, then we’re letting people down. I believe we have to help other people that are less lucky than you are. We need to just focus in on the things that matter and medical research funding especially for children, is one of the most important things I can think of.
I’d like to thank Sparks supporters so much! Supporting the charity is amazing and so many more people should. It’s so kind and generous and we need more people like that in the world.
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